John’s Story

John has Granulomatosis with Polyangiitis (GPA/Wegener’s).  In today’s video, John talks about some of his early symptoms in 2011 that were largely untreated because doctors couldn’t make a diagnosis.  For many months, John was treated for pneumonia because of his chronic coughing and lung problems.

Interestingly,  in 2012,  John went on a vacation in Europe with a group of bicycle enthusiasts, many of whom were retired,  board-certified physicians.  He received constant evaluation, but the final conclusion was that if he did have pneumonia  there was something else quite serious also happening.

John talks about being admitted to the hospital in a near comatose state because of the advancement of the vasculitis.

He discusses his current condition and how he is physically and mentally learning to live with GPA.

John also shares some good advice about being an educated, empowered patient so you can be a partner in getting a diagnosis when time isn’t on your side.

Click here to watch his video.

The Extraordinary Vasculitis Stories project is produced by Ed and Mary Becker for the Vasculitis Foundation.